Single people with cancer often face the toughest battle alone

CHICAGO — Claudia Peyton went to the doctor's office alone to receive the terrifying diagnosis.

Doctors told her she had an aggressive breast cancer, which would require surgery, chemotherapy and radiation. Treatments would be so intense, she'd need rides to every appointment. And sometimes she would be too sick to get out of bed.

"All I could do was sob," said Peyton, 55, who is single and remembers coming back to her studio apartment afterward and collapsing in grief. "There was fear and anxiety and I wanted to feel supported."

So the former adjunct fine arts professor at Northern Illinois University and Harper College did what she had to do to get through her illness. She assembled a remarkable team of family, friends and ultimately, strangers, who drove her to chemotherapy sessions, brought over dinner and even did fundraising to make sure her bills were paid when she was too sick to work.

"I'd come from an upbringing where I believed that I had to do everything alone," said Peyton of Chicago's Roscoe Village. "I think when you realize when your life might be limited, all my baggage needed to go and I needed to invite people in for support."

Alone as Peyton felt after her diagnosis last year, the experience is becoming increasingly common for a growing number of single people like her diagnosed with cancer and facing the prospect of fighting for their lives alone, experts say.

Their solo efforts to triumph over the disease are inspiring additional resources and training for medical staff as well as encouraging new support groups, according to advocates.

"As people are choosing to live alone and are living longer, this situation is going to become more and more normal," said Lidia Schapira, an editorial board member for Cancer.net, a website of the American Society of Clinical Oncology. "It's really important for us to understand the community the patient is coming from."

The American Cancer Society doesn't track how many are single at the time of a cancer diagnosis, but last year, more than 34,000 people in Illinois who were alone or had nowhere else to turn depended on the organization for transportation, health counseling or even just a friendly voice on the phone. That number is up from 31,215 the year before, and 27,125 in 2009, according to the society.

Recognizing this, oncologists and medical staff are learning how important it is to inquire early on if a patient has support.

"The first thing the oncologist should say is, "I notice you've come alone. Is there somebody who is going to be able to help you?" said Schapira. "You need people to be there to help you with their time, their ideas and sometimes even their practical resources."

Today, 67 percent of those diagnosed with all types of cancer are expected to live an average of five years or longer — a higher survival rate than ever before, according to the American Cancer Society. But when a patient doesn't have adequate support, it can be hard to feel optimistic about their chances.

"It's just very emotional," said Cathy Galligan, director of patient navigation services for the cancer society. "So to get somebody at the time of diagnosis, or shortly after, to know that there's help available — it's very important to give them help and hope."

After receiving the news, Peyton allowed one of her sisters to create and keep a blog seeking prayers and financial contributions. She sought out a spiritual adviser, with whom she scheduled phone conversations after important check-ups and other emotional moments.

And, most notably, she created a weekly email that she called her "Support Needs List."

Sent to about 45 people who offered help, the list detailed shifts to handle needs as simple as a ride to the hospital or a phone call at bedtime.

Friends eagerly grabbed opportunities to help, and eventually, word of Peyton's list spread to former colleagues, high school classmates she hadn't seen in decades — even strangers willing to pitch in.

A nun from her high school became a regular driver. Former students cooked meals. Checks, sometimes in sums as large as $250, arrived in the mail from people she had never met.

Peyton said she went from being overwhelmed by the disease to humbled by the kindness of others.

"Seeking out support helps us stay connected to something greater than ourselves: it's community," she said.

Those on Peyton's email list said they got something out of their good deeds, too.

"She was tough. No self-pity. I think that made people want to help," said Mary Ellen Hynes, a friend who stopped by frequently to tidy up Peyton's home or just offer company. "People felt nurtured by her presence."

The story is a refreshing change from what medical experts more typically see when single people deal with cancer on their own, said Michelle Peters, a nurse at Swedish Covenant Hospital, who helped Peyton navigate the treatment process.

"I think a lot of time, people's needs are not met because they're not expressed," Peters said.

Officials at the American Cancer Society had such individuals in mind when they created the Patient Navigation Services program in 2003. The most popular feature of the program is the transportation component, which is free of charge.

Last year, the program offered 72,000 rides to people in Illinois unable to visit a doctor on their own.

Some of those who need help are young and never-married; others widowed; still others homeless.

All of them feel they have nowhere else to turn, Galligan said, who remembers a former patient.

"She was going home, and I said, 'Who's going to help you?' She said, 'I don't have anybody,'" said Galligan. "We're trying to help people overcome barriers to care."

For the first three years of his battle with blood cancer, Daniel Adams of Vernon Hills, Ill., relied on his wife, Margaret, for rides to treatment and for emotional support. But when she was diagnosed with her own cancer last year, which took her life in 11 months, Adams began riding his bike to chemotherapy treatments.

"You don't really have a choice in the matter if you want to live," said Adams, a former U.S. Marine. "It's all you can do."

Adams said he eventually learned there were many resources available for single people dealing with cancer — from rides from the American Cancer Society, to grants from pharmaceutical companies to pay for medication, to medical coverage from the U.S. Department of Veterans Affairs.

"I don't think a lot of people know what's available," Adams said. "There are companies that will help you. It's just that you don't know."

When Kathy Miller's husband, Steve, was diagnosed with lung cancer 10 years ago, she drove him to every doctor's appointment and treatment. She spent nights by his side in the hospital. And she convinced her bosses to let her work from home so she could take care of him.

Steve Miller died in 2005, which left Kathy on her own when diagnosed with her own cancer two years ago.

Miller of Arlington Heights, Ill., leaned on her son and brother for support and was grateful, but she felt guilty about the burden she was placing on others, she said. And even with the help friends and family offered, she still had many moments of solitude.

"When they leave, there are times when you are so weak that ... you just can't even get up and get yourself something to drink," said Miller. "I take myself as a very strong female, but it was one of the hardest things that I have ever had to go through."

Miller felt a huge sense of relief after a social worker connected her with the American Cancer Society's free ride program. The service helped her so much that when she learned she was cancer free in June 2011, she volunteered as a driver coordinator.

Today, she dispatches a team of about 30 drivers to help cancer patients in the northwest suburbs who have no one to take them places.

It feels good, Miller said, to be able to call someone and tell them help is on its way.

"Many of the patients know that I'm a survivor, so when they're not doing good or not feeling good, I say, 'Hey, I understand,'" she said.

A few months after her last radiation treatment, doctors recently found cancerous cells in Peyton's body. She spent hours on phone with oncologists and insurance company representatives, planning the next round of her fight.

Then she sent an email to her Support Network. A week's worth of rides to the doctor were filled within minutes.

"When I think about the last year ... what keeps me going is knowing that I have hope," she said.